I thought I could come on here and vent - till I read some of the posts here - and I thought I had it bad - -
12/1996 was diag with this and started the chemo and radiation treatments - 6 weeks.
I have had 5 doctors tell me that I was over treated - 7000 rads
Collateral damage: soft palat does not work, throat not up to par, Hypothyroid - daily meds, salavary glands burned out along with the jaw muscles. It was 2 years b4 some true feeling came back to my hands and feet. I have to be careful when doing anything because I only notice cuts when I see blood. I now have only one tooth left - figure it will be gone within a month. My hearing is to the point that hearing aids are not cutting it. my eyesight has changed faster then would normally happen due to age - 62 last month. sense of smell is off as is nearly no taste. I used to do all the cooking - now it has to be by rote.
I am liquid diet only now. and that has to be done slowly.
I am stuck with 6 cans of ensure plus a day to stay alive, along with a hand full of vitamins that have to be crushed and mixed with yogurt and then thinned down so I can get it down, a spoon at time. No solids. they just wont go down.
I tear up when I smell fresh bread or Bar-B-Q from the neighbors.
I was forced to retire early on soc.sec. disability since I have no strength left to do anything for any period of time.
Sometimes I want to smack some people that say 'oh, but you are alive' - well there is doubt in my mind that this is a good thing.
Do I worry it will come back - not for a second - only that the excess radiation will end up messing me up again, and maybe worse.
It was a surface cancer - created from smelling industrial strenght roach spray that had been used illegally, in the place I had been staying while attending a 6 week training school. the building had to be torn down - now a used car lot. 2 deaths were attributed to the spray.
hell, I was just about to make friends with the roaches too. hahaha
I decided not to sue the Dr. at the cancer clinic due to the fact that they save a heck of a lot of breast cancer patients in this area. and, whats done is done. The dr. refused to accept the idea that the equipment was doing what I complained about at the time.
I discovered this site while researching (i was bored) the facial muscles and salivary glands in the unlikely-hood that I should ever win the powerball hahaha maybe stem cells could help ?? its a dream...
Did I whine too much for you - sorry - just venting.
If it does pop up sometime ? ! ? well... I have a 12ga. that will clear it out. wont go thru that hell again and end up worse.
I truly feel for the ones I have read here that are worse off than me. I can live with where I am - but I dont think I could be as strong as you other people.
nuff said
ted
:-)

Hey Ted
Welcome, and thanks for sharing your story. I think you've had just as bad a time as most here, and you've come through it.

I find it really interesting to see how strong we really are, when things are truly "life and death". We're pretty adaptable creatures, us humans
Wayne

I dont know if I could take what u went thru.
that just seems overwhelming.
ted

Hello Ted.
I really feel for you. You really got a bad ride.I would sue the roach sprayers if not the Dr. also. But I quess thats up to you. My Aunt And Uncle are like that. They do not believe in sueing.You can vent here anytime Ted. A lot of people will correspond with you. I am yet to start my treatment, but I can not eat solid foods now.Here is something I do. Get a piece of that BBQ and suck on it for the juices. Just to savor the taste, Dip that bread in the sause and let it get soft and eat it. Try what you can. You can PM (private message) me anytime or e-mail me.Look in the faq and it will quide you. Gotta go. Stay in touch. I am one of a multitude who will help in any way we can.
Have a good evening Ted... Petey
PS. Read these forums, You can help people here with your experiance.You have a lot you can contribute!

Hi Ted !

Welcome to OCF. You are welcome to say what ever you wish. Maybe someone can offer some in-site or help. Everyone here has had different experiences, all have Oral Cancer.

I think it helps just knowing that someone knows how you truly feel. Take care and keep posting.

Diane

Ted,

After rereading your post, I am wondering if you have ever had your throat dilated? I have done mine once so far. I will need another one here soon, due to having problems again swallowing. It really makes a difference.

Hope this might be something that will help. Do look into it. It is an easy procedure. I think they refer to it as "Esophagus Dilation."

Take care,
Diane

I am not sure if thats a problem. swallowing is when the throat constricts and sqeezes it down the esophogus. the soft palat is supposed to close so things dont go up into the nasal cavity.
mine does not close.
the lack of saliva means no 'oiling' of the mouth and upper throat, so stuff sticks.
if I had any teeth left - solids just dont go down - pill wont - they stick or go up.
so.. meds and vitamins get crushed - mixed with 2 spoon fulls of yogurt and thinned to liquid so it can be swallowed - a regular size spoon full at a time. this has to also be done with my head faceing forward. any downward postition and - - up the nose. It is a real process.
I drink fluids all day - same caution.
Used to be funny when u are about 8 to have stuff come out the nose LOL
just sad now. hahaha
I have an appointment with another oral surgeon, now that I am on medicare. my ENT is worried that the rotting teeth will rot the jaw/scull bones and be a real big problem. The learning hospital in portland wanted $3000 to take them all out. like I have $3 to spare.. LOL
A real fun procedure I am REALLY looking forward to,,, 'NOT' LOL
my first 4 years when I had teeth I could eat things that could be masticated ( my trismus hadnt gone very far to be a problem ) and they could be swallowed - carefully.
meat and bread (to name a few) cant be chewed without saliva.
so... there I am.
but - I will ask the ent if it might be nessessary.
thanks
ted
:-)

Hello Ted.
You have me laughing down here in South Florida...You are a funny man! It takes the edge off when we can make jokes of our defects and situations. I think you found a home away from home here. On a serious note though, there is a prosthesis for the roof of your mouth to prevent "backwash" for lack of a better word. It's an orbitor something or other. I believe Colleen aka August uses one. I think it's to replace the hard palate, I'm not sure. You said your soft palate. I'm sure they have some type for your situation. Someone will chime in here and give you the correct name. I am sure your problem has a solution. PS. You don't have to be 8 years old to laugh when someone has something come through their nose! It usually happens after an extremely funny joke or incident.
Take care, Petey

Hey Ted.
The prothesis I was refering to is called an "obturator" and it is for the soft pallet. This is what you NEED. Please read the topic "Dr. Phan, I want your opinion of recontruction" written by August in the "introduce yourself" forum.(this forum) Dr. Phan DDS MS recently came to the OCF forum to volunteer his advice. He is member #4114. You should post him a letter or have him read your topic "Nasal Pharanial-whinning". Once he understands your problem he can guide you. THERE IS NO REASON, for you to not have the abilitly to swallow without having "backwash" through your nasil cavity. I urge you to persue this avenue of treatment. THIS WILL DRASTICALLY IMPROVE YOUR QUALITY OF LIFE! Looking out for you, PeteyB

This is pretty scary to me considering I haven't started my treatments yet. YIKES!!! What kind of questions should I ask my doctor before radiation? I feel bad for you.